irs program accomplishments · form 990 part iii · fy2023
What they reported doing
- #1 primary $50KRESEARCH AND CLINICAL SERVICES INCLUDING ACTIVITIES THAT SUPPORT THE MALIGNANT HYPERTHERMIA HOTLINE, THE NORTH AMERICAN MALIGNANT HYPERTHERMIA REGISTRY, AND RESEARCH.
- #2 $30KPATIENT PROGRAMS DIRECTED TO EDUCATE AND SUPPORT MALIGNANT HYPERTHERMIA SUSCEPTIBLE PATIENTS AND THEIR FAMILIES
named programs · 4 · from sources
What they call their work
MH Hotline
Provides immediate support and guidance for acute malignant hyperthermia crises through a dedicated hotline staffed by MH experts.
MHAUS Webinars
Offers CME-accredited educational webinars for healthcare professionals and families on topics including MH management, mock drills, and vaccine safety.
North American Malignant Hyperthermia Registry
Collects and maintains clinical data on MH cases to advance research and improve understanding of the syndrome.
Patient Education and Support Programs
Provides resources and support for MH-susceptible patients and their families, including educational materials and event participation.
activities · 5 groups
What they do
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Rare Genetic Disease Research and Advocacy 2 activities
- Conducts and supports research on malignant hyperthermiaEngages in and funds scientific research related to malignant hyperthermia, including data collection through the North American Malignant Hyperthermia Registry to advance understanding of the condition’s genetics, pathogenesis, and treatment.
- Provides patient and family education and support servicesOffers comprehensive educational resources, counseling, and support to individuals susceptible to malignant hyperthermia and their families through materials, webinars, newsletters, and direct access to support committees. Includes guidance on diagnosis, genetic testing, prevention, and life after diagnosis.
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Disease-Specific Clinical & Patient Education 2 activities
- Distributes educational and preparedness materialsProduces and distributes a wide range of educational tools including booklets, pamphlets, educational packets, transfer guidelines, and preparedness products to help patients and medical facilities manage and prevent malignant hyperthermia crises.
- Offers specialized information services for related conditionsOperates the Neuroleptic Malignant Syndrome Information Service (NMSIS) to provide expert guidance and answer questions about neuroleptic malignant syndrome, a condition with clinical similarities to malignant hyperthermia.
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Mental Health Education and Awareness 1 activity
- Hosts educational webinars and events for patients and professionalsOrganizes and delivers live and recorded webinars covering a range of topics including MH crisis management, mock drills, genetic aspects, and the impact of conditions like COVID-19 on MH, serving both medical professionals and affected individuals.
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24/7 Crisis and Warmline Support Services 1 activity
- Operates Malignant Hyperthermia (MH) Hotline and North American Malignant Hyperthermia RegistryProvides 24-hour clinical and research support through the MH Hotline and maintains the North American Malignant Hyperthermia Registry (NAMHR) for inquiries related to MH symptoms, genetics, testing, and research. This service supports both patients and healthcare professionals in diagnosing and managing MH events.
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Medical Research & Education Dissemination 1 activity
- Provides healthcare professional training and educational resourcesProduces and delivers educational content and training programs for medical providers, including simulation videos, mock drill kits, procedure manuals, and accredited webinars on malignant hyperthermia management, in-service training, and crisis preparedness.
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financials · form 990 · fy2023
revenue
Total revenue$479K
Contributions & grants$201K42%
Program service revenue$3K1%
Investment income$87K18%
Other revenue$187K
expenses
Total expenses$543K
Program expenses78%
Admin / overhead18%
Fundraising4%
Salaries & benefits$220K
Grants paid out$50K
Largest expense lineCompensation
balance sheet
Total assets$2.59M
Cash$146K
Investments$2.24M
Liabilities$92K
Net assets$2.50M
Liquid reserves52.8 mo
5 years on record · 2019–2023 · YoY revenue -20.8%
leadership · form 990 part vii · fy2023
Who runs it
paid leadership · 1
| Name | Title | Hours/wk | Compensation |
|---|---|---|---|
| LINDA SCHOLL | EXECUTIVE DIRECTOR | 40 | $81K |
board members · 13
- BETTS MEGAN — BOARD MEMBER
- CAROFF STANLEY — VICE PRESIDENT-DIRECTOR OF NMSIS
- KELLER CURT — BOARD MEMBER
- MASHMAN DARLENE — VICE PRESIDENT
- MERCER CHERYL — BOARD MEMBER
- NAPOLITANO STEVEN — BOARD MEMBER
- POLER MARK — BOARD MEMBER
- RIAZI SHEILA — BOARD MEMBER
- SCHWENDEMAN CONNIE — SECRETARY
- SUMANIS JACQUELINE — BOARD MEMBER
- TEEDA PINYAVAT — BOARD MEMBER
- TOBIN JOSEPH — TREASURER
- WATT STACEY — PRESIDENT
relationships · 12
Who they work with
- Accreditation Council for Continuing Medical Education (ACCME) Government — Accreditation body overseeing the continuing medical education standards for the webinar.
- Accreditation Council for Continuing Medical Education (ACCME) Government — Provides accreditation policies and requirements for MHAUS CME activities through joint providership with SUNY Upstate Medical University.
- Accreditation Council for Continuing Medical Education (ACCME) Government — Provides accreditation policies and requirements for MHAUS continuing medical education activities.
- MH groups Partner — Collaborates with MH groups to provide information and resources to medical and lay communities.
- MedicAlert Partner — Manages MH ID tags through a partnership with MedicAlert.
- Neuroleptic Malignant Syndrome Information Service Partner — Operates NMSIS to provide information and support related to neuroleptic malignant syndrome.
- North American Malignant Hyperthermia Registry Partner — Collaborates with NAMHR to support research and data collection on malignant hyperthermia.
- SUNY Upstate Medical University Coalition — Joint provider of accredited continuing medical education activities with MHAUS.
- SUNY Upstate Medical University Partner — Joint provider of MHAUS continuing medical education activities accredited by ACCME.
- SUNY Upstate Medical University Partner — Joint provider of accredited continuing medical education for a live webinar on malignant hyperthermia.
- SUNY Upstate Medical University Partner — Jointly provides Continuing Medical Education (CME) accreditation for MHAUS webinars.
- SUNY Upstate Medical University Partner — Jointly provides continuing medical education accreditation for MHAUS webinars.
strategies · 4
How they approach the work
Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.
- Awareness and Information Dissemination to Reduce Morbiditymethodology: awareness-and-education-to-improve-clinical-outcomesBy increasing awareness and disseminating up-to-date information about malignant hyperthermia to medical professionals and the public, MHAUS reduces delays in diagnosis and treatment, because timely knowledge access improves clinical decision-making and patient outcomes.
- Expert-Led Education to Standardize Clinical Responsemethodology: expert-led educationBy delivering expert-led webinars and training, MHAUS ensures consistent, accurate recognition and management of malignant hyperthermia among healthcare professionals, because standardized education from clinical authorities improves treatment fidelity and patient outcomes.
- Peer-Led Support to Enhance Patient Engagementmethodology: peer-led educationBy connecting individuals and families affected by malignant hyperthermia with trained peer volunteers and those with lived experience, MHAUS increases engagement and trust, because shared experience fosters emotional support and practical guidance that improves preparedness and reduces isolation.
- Simulation and Interactive Training for Clinical Preparednessmethodology: simulation-based_trainingBy using simulation-based and interactive webinars to train medical teams in malignant hyperthermia emergency response, MHAUS improves real-world readiness, because experiential learning in high-fidelity scenarios increases retention, team coordination, and speed of intervention during actual crises.